Questions to others about UC

I was diagnosed with UC in January 2011 after my colonoscopy, Doc had me on (2) 800mg Asacol HD pills in the morning and at night.
After struggling with my UC and Asacol for about 3 and a half weeks I had to ask my Doc to put me on something else because the Asacol just wasn't cutting it.
So my Doc kept me on the Asacol and put me on 40mg prednisone with a 5mg taper every week.
After about 2 days on the pred I really felt pretty good UC wise, good enough that I got outside and did some yard work and bush removal which after words I noticed my hands were kinda sore.
Got down to 20mg / 15mg on my taper and UC symptoms started coming back so doc put me back up to 15mg pred in morning and 15mg pred at night, and had me stop taking the Asacol HD since I had be on it
now for over 2 months and it did not appear to be doing me any good. I'm not waiting to see my doc next week to discuss starting another drug such as Lialda along with the pred taper again to see if that will work.
and that's where I'm at now. Gained about 11 pounds from the pred, kinda puffy all over face and neck and belly. All I need now is to get diabetes.

My hands now feel as though I have arthritis in my knuckles from after doing the yard work stuff 5 weeks ago, they do not seem to be healing and I just have that constant dull pain in my knuckles across my hands.
I'm wondering if anyone else has arthritis symptoms like mine, could they be from the pred use, or could it be from the UC, or could it just be from doing the yard work and it will heal, I've done yard work before and never
had the knuckle pain.

Also what is remission? I though my immune system was attacking my colon all the time once the switch was turned on.
Once you go off the pred your immune system should start winning again and back to UC again.
Doesn't everyone at some point need to be on 6MP or Imuran to deplete your white or red blood cells (I forget which) so as to limit the inflammation and even it out so that your colon can heal itself at the same rate your
immune system is trying to destroy it (isn't that what remission really is)?

At what point do people feel they needed to tell the Doc that hey the 5-ASA compounds are not taking hold and you want to start the Immunomodulator meds because you can not be on prednisone forever?
I mean I can see where I'll be taking prednisone and some form of 5-ASA med for a long time trying to see if they will hold a remission while all the time i feel better but just not totally right. I'm wondering if others here
have gone down this route only to find that they really could not get back to normal life until they started taking 6MP or Imuran and then they were able to get into a normal regular pattern that they could live with instead
of wasting all the time trying the different 5-ASA meds and prednisone. I want to get to some kind of UC sufferer normal ASAP and get on with my life. I'm just wondering about all the time and pain using the semi effective
5-ASA meds instead of just going straight to the Immunomodulator meds to start with since UC is a chronic condition.

Do any of you out there have any hope of a cure for UC in your lifetime? Seems like they are doing great stuff in science and bio nowadays. but maybe the drug companies will still need to make money for awhile
before a cure can be allowed. Have you seen the actual prices for 5-ASA meds if you don't have insurance, it's crazy.

I hear ya Kazbern, just seems like the 5-ASA meds are so weak that if you are using them for remission I wonder if you are really not feeling as good as you would be if you were taking the
stronger meds like 6MP or Imuran? I feel alot better now on the pred then without the pred, but I know the pred has to end and when it does I want to be on something that is going to actually work
to keep me from being house ridden (toilet ridden). I have to get on with my life and acquire some sort of normalcy and I understand the safe approach with the meds, But I was wondering if the
majority of people end up on the stronger meds anyway and why not cut to the chase because it's a chronic disease and will always need something to stomp it down.
I appreciate your reply Kazbern, Thanks!

JHarvey, everyone's an individual. Your individual tolerance of risk, your individual disease path, your individual needs re: work/family/personal life.

From my GI's point of view, I'm not "sick enough" to merit a step up on the chain of meds. I haven't had bloody stool in years. I rarely pass mucous. I haven't had diarrhea in months. During the worst of my flare last year I lost about 5 lb. My weight is normal, my BMI is 23.

My biggest complaint for a long time has been joint pain. I have arthritis in my sacroiliac joint from this illness, and I cannot turn back that clock. So if I went on stronger meds like my rheumatologist wants me to, the improvement in my daily lfe from reduction of bowel symptoms would be slight, potentially much more significant would be the reduction of knee/shoulder/elbow/hand/SI pain. But it won't fix the changes in my SI joint.

My GI put me on sulfasalazine more than a year ago, an "old" IBD med that has recently come back into favor because it seems to successfully address joint pain in IBD patients. It worked really well for my hands, less so for the other large joints (shoulder/elbow/knee/SI). Since my hand pain was above and beyond the most debilitating of all of these, I am pleased.

I still have a chronic illness, and I still have bowel symptoms. I have ongoing right upper quadrant pain that needs to be addressed (probably more imaging studies before I know what to do next). So the option for stronger meds is still out there for me. I have a lot of years left to step up the meds, and I do get anxious sometimes about increasingly worse arthritis in my SI - stronger meds would stop that in its tracks. My rheumy had me do a pelvis MRI with contrast last fall to see if there was active inflammation in the SI, and there was not. So he backed off.

My point is that managing this illness is quite complicated and what works for one person is not necessarily right for another. Plenty of GIs have joined the thinking that strong meds in the beginning leads to a better outcome overall, others have not agreed. It's something for you to think about carefully.

You seem to know a lot about all the meds but haven't mentioned rectals...why? Your doc should have put you on them in conjunction with the Asacol....rather than the pred.

Kind of simple when you think about it....and common-sensed somehow...

q

     If you speak with 50 people with UC you are going to get 50 different responces to which meds work and which do not, etc.  Everyone is individual when it comes to this disease.

     When first diagnosed in 1998, I was placed on 40 mgm of prednisone with a 5 mgm per week taper and Asacol for maintenance.  That kept me in remission for two years.  Flared in 2000, switched to Colazal from the Asacol, and of course, the dreaded prednisone, same taper.  Another two year remission, flare, and now placed on 6MP with prednisone and Colazal.  I might add that I also was on Rowasa enemas while flaring.  My uc was confined to the rectum.  Flared in 2003, 2004 and 2005, with flares becoming closer together.  Taken off 6MP two weeks prior to starting Remicade, that failed after 3rd infusion and then tried Humira for three months.  Finally had total colectomy with end ileostomy....should have had that ten years ago, but hindsight is 20/20.

     By the way, your RA symptoms may be a product of prednisone.  However, my RA symptoms appeared AFTER I was finally off the prednisone.  But, prednisone gave me osteoporosis, high blood pressure, insomnia, mood swings and high glucose levels.  Everthing except the osteoporosis is well under control today.  I only take one pill for high blood pressure.  Before my operation, I had to take anywhere from 17 - 25 pills daily and rectal meds.

Lialda has a patient assistance program and possibly you can get it for free, or at least at a reduced rate. Just google "Lialda Patient Assistance Program" and it will come up. I switched a little over a year ago from Asacol to Lialda and seem to be doing well with it. The last time I tapered prednisone I kept reflaring. Once I introduced the mesalamine retention enemas I was able to get things under control and not reflare. There are also lots of alternative supplements you can try. I was using a Boswellia/Curcumin capsule sold by NOW that I ordered off of Amazon. You can google them or even search on the forum to find out information on them and other alternative/supplemental treatments. They are both anti-inflammatories and may also help with the arthritis.

Good luck finding a job. I am also unemployed but have COBRA until November. The job market sucks!

Prednisone can do a lot of damage. I didn't understand how much until I got a new doctor and did a bone scan. I was on if for over 8 months at a time as I was scared to go on remicade. It took me over two years to get into somewhat remission with remicade. As far as I know, unless you are a millionaire you can't afford remicade without insurance. When I got it at my old doctors office it was around 13,000.00. Now I get it at a hospital and the explanation of benefits said it was 27,000.00. Yes, that is thousands. And you have to get it every 6-8 weeks.

JHarvey:

When I started reading your post I wasn't expecting much.  I mean I expected it to be a typical what do I do post which is quite common around here.  Instead I read a post to which I could relate to a lot.  The 5 ASA meds didn't do alot for me either and I gave them years to work.  I had to use prednisone here and there to keep things in check.  It was a horrible way to manage my disease.  I was living the life like you describe.  It was hard to do anything without the thought of going to the bathroom ruining whatever I was  I was planning on doing.  I became anemic, lost weight and was overall tired. 

Eventually I got on the Imuran and that medication straightened out my colitis right away.  Before Imuran my wbc was highly elevated and the Imuran straightened out any wrinkles.  I have been on it for more than 2 years without a blip. 

Good luck with your ulcerative colitis.

MyUC

Rectal meds - I used them "as needed." When I first got diagnosed, my DR told me to use an enema 3-4 times per week. I did that, more or less, for a couple of years. In general, I don't like using the enemas, but they absolutely helped clear my proctitis, so I stuck with it.

Then I stopped.

Six years ago, around the time of Hurricane Rita, I had an awful flare that got me on 60 mg of prednisone for a month.  Ahem.

I went back to using the enemas a few times/week. I changed GIs. My new GI asked me if I could tell when the inflammation in my rectum and sigmoid colon was worse or better - I hadn't ever really thought about it, but at that moment I realized I could. So I used that knowledge to decide when to use my enemas and when I could skip it. Recently I read some tips on this forum about how to make the enemas more tolerable, and I tried that and it was MUCH better. Nothing like spending 10 years doing something "wrong" and then to get it "right!"

So yes - you will probably have to use a rectal med for ever. It won't be every day. After a while, you will probably develop enough awareness to figure out when you need it and when you don't.

I never understood why people use these drugs "as needed." We have an incurable condition so why would stop taking your meds ? Just because you don't feel symptoms ? In my mind I think of it on these lines: people who have AIDS take their medicine no matter how they feel because they know it's never going to be cured but in hopes to keep things suppressed. I guess I just have that same mindset.